I've shoved this in the news section because I think it is news and good news at that.

Most importantly I'd like explain how different my experience was compared to what you might expect from the PACE CBT manual. I've still got a couple of sessions to go so please excuse if I switch between present and past tense. And I have to admit I'm a little nervous of sharing this.

It's in three parts, overview, therapy and gains.

Part I Overview
I had declined therapy for a couple of years at Barts. The idea of someone attempting to alter my false illness beliefs didn't have much appeal. This is particularly the case because my main belief is that there's a strong biological basis to this illness and though mind certainly affects body, it's often forgotten that body has an equally potent impact on mind and brain.

My decision to have a go at therapy came finally when I couldn't cope with the frustration any longer.

Just so you know, I don't have primary or comorbid mood disorders or mental health problem, apart from a couple of phobias. I've had ME for 5 years, experienced and still experience quite severe cognitive difficulties when fatigued. PEM for me, a crushing heavy fatigue, can be immediate if I do static exercise eg handgrip test or might hit 72 hours later if I've overdone it in a less intense but more prolonged way. Dysautonomia particularly POTS, and hypermobility are also a problem.

When I first met the therapist I mmediately felt comfortable with her and I think that has made all the difference. She asked what I wanted to achieve from therapy I said, 'good health, increased vitality.'

Very clearly, she told me she couldn't really offer that as therapy was not a cure. I was told that therapy was not a cure several times. What she was offering however, was integrated psychological therapy. This would hopefully help me cope better with the illness and live life in a more flexible and possibly more fulfilling way.

There are four parts to the therapy: CBT, Pacing, Mindfulness and Acceptance and Commitment therapy. I'll deal with them separately and give examples but they do in fact weave nicely together.

i) CBT focused on how I could do things differently in order to avoid exacerbating fatigue.

For me that meant learning to do less, resting more strategically and focusing on really looking after myself, essentially it's about being kind to myself.
And we looked at why I had difficulty doing that.

There was a strong practical element to the CBT.
We sometimes ended up talking about really mundane things eg hoovering or cooking and how best to avoid inducing fatigue. ME gives me half a brain at times and its a chore to think through even straightforward actions. So in discussing day-to-day difficulties I was able to tweak the endless little things that cause fatigue.

I also found that without even talking about it, I was creating boundaries, being more 'selfish' with what I was prepared to do/not do, in order to protect my energy levels. e.g. I would be inclined to continue chatting with a friend for too long perhaps because they wanted to/I wanted to and and they were unaware of how I was feeling. So therapy helped me to articulate my limitations more clearly, as much to myself as anyone else. That's been strangely empowering.

Key point: The main thing that came out of CBT was 'How could I do that differently in order to reduce fatigue ?'

ii) Pacing was an important part of therapy. Essentially this was learning to take the top and bottom of activity levels to avoid boom and bust. I had worked with an OT on this but with the psychologist I could talk things through more easily and consider the reasons why I was doing stuff in a particular way. So it did give me insight.

For me pacing, involves more regular rests and doing things in a chunked way.I started with an arbitrary 10mins rest and 10 mins activity and built from there. And I still play around with rest/activity ratios and go back to 10 min activity when feeling rough. There are days when I dont pace at all.... but then suffer for it.

Because I'm really good at ignoring my body, I'm attempting to be more sensitive to my energy levels but using a timer is really useful. I still struggle with getting it right. Perhaps there is no 'right' as energy is in a constant state of flux.

Key point:Find a rhythm to rest/activity that I can sustain for a while. And take breaks no matter how enthralled I am with whatever I'm doing.

iii) Mindfulness.

I learnt mindfulness some years ago pre-ME but had used it only sporadically since becoming ill. This time, it was like learning the principles all over again but with an added bonus.

Whereas the cognitive part of CBT attempts to understand if cognitions are helpful or not (though I can't say I came across this in therapy) mindfulness encourages me to note my thoughts or feelings without getting involved in them.

It's an attempt to find the observing self, And this time round I've learnt to observe more affectionately and benevolently which makes a big difference. Fundamentally, when I'm able to watch thoughts/emotions they lose their power over me and I can attain a certain calm.

It's had a profound impact when dealing with strong emotions like the grief of having lost my life, the bursting frustration and the anguish at not being able to do even the simplest things at times. Doing daily meditation helps to support this. ( I am not yet disciplined enough to do that!).

Key point: Gentle noting of difficult thoughts and feelings, accepting them rather than struggling against them, dissolves their power.

iv)Acceptance and Commitment Therapy
This provides a framework for creating a flexible, meaningful life based on one's values while taking into consideration one's limitations. We looked at what my fundamental values are and how I can use those to guide me. It ties in with both mindfulness and CBT. I'm still reading about this.

Psychological/Emotional The reintegration of mindfulness has been life changing because it is altering the way I relate to myself. I'm more benevolent toward myself and struggle less, expect less of myself I suppose. I'm also less re-active. I locked myself out of my home the other week and I was surprised that I experienced only a minimal freak-out.

Pain I use other stuff for pain. But I suppose I get a little less pain cos I over-do it less. I cant say pain levels reduced particularly.

OI and Sleep. - I don't think therapy has had an impact on OI. Both POTS symptoms and sleep have been improving since I got rid of a couple of tooth infections last year. But I still have variable POTS and crap sleep when I've OD'd (overdone it) or if I have an infection.

Infections -I have just had four colds back to back. They have emerged properly instead of lurking and causing a dragging breathlessness ontop of CFS. Though I relapsed with each cold I've tended to pick up faster... only to get another cold! Perhaps this suggests my immune system is kicking in, which has got to be good!. A few recent anti-oxidants might be helping that too.

Cognitive and physical function. Since dumping the colds, I certainly have more mental energy after each one. Quite difficult to deal with because my physical capacity really hasn't caught up. There are moments of increased vitality (yey!) but even with this there is still concurrent fatigue. Its quite an odd sensation. And I'm still very limited physically compared to pre CFS, (even pre-colds at the moment).

Specifically, I can have longer telephone conversations, am more engaged with friends and less zombie like in general. I can focus for longer without fatigue. But my brain isnt nearly where it was pre-CFS and I still have quite bad cognitive difficulties if I over do it/have cold or stomach bug. Its just that now I deal with it better.

In conclusion
So therapy is not a cure but I was told very clearly that it wasn't a cure in the beginning. It has certainly helped me cope and I do feel I might get some more physical energy from it eventually too (post colds recovery). I've got a couple of sessions left and I have to say I've really valued working with an excellent therapist who was experienced in working with this illness. She knew her limitations in terms of biology but was very kind, perceptive and clued up when it came to my practical, psychological and emotional needs. Good stuff!

That's great new, Astrocyte! That is what CBT was originally intended to be (as I understand it), and is the CBT one is most likely to get in the US. Wesseley's false illness belief crap has no place in ME/CFS treatment, but CBT that helps us cope with the trials of a debilitating chronic illness is a valuable adjunct to treatment of physiological symptoms.

It is encouraging that Bart's is offering appropriate CBT -- therapy that is clearly understood not to be a cure, or even a treatment for physical symptoms, but simply a coping tool. It sounds like the therapist you saw is knowledgeable about ME, which is a rarity, and was not encouraging you to do more than your body can tolerate. I hope this is a sign of better times to come for UK PWME.

Have you asked your therapist about why it is the approach to CBT they've taken for you is so different from that described in PACE? Do you think that the people working there feel any sense of shame over the way in which views about CBT for CFS and it's efficacy have been manipulated and misrepresented?

Hopefully we'll one day have a more honest and open discussion of CBT and it's potential uses for CFS, along with some accountability and an apology for the problems of the past.

Sorry to hear about your recent colds, but hopefully things will keep improving for you now we're approaching Spring. Good luck with your health.

What a wait it has been for all those past much abused by this profession. It's an illness with much found pathologies - why have we had to wait so long for the establishment to catch up.Perhaps a new beginning now.

iv)Acceptance and Commitment Therapy
This provides a framework for creating a flexible, meaningful life based on one's values while taking into consideration one's limitations. We looked at what my fundamental values are and how I can use those to guide me. It ties in with both mindfulness and CBT. I'm still reading about this.

Click to expand...

Thanks for sharing your experience. I have done some of this work before too. Not in relation to being sick, but I"m able to apply the principles to that situation now. You did a really good job explaining it all so clearly.

The part about the Acceptance and Commitment Therapy is new to me. That is where I think I probably struggle most. So much of what I valued in my life, like being independent, taking care of myself and family, etc. aren't really options for me anymore. I'm not even able to do things I'd like usually for others. Trying to figure out life when you can't do much of anything is hard! I'm so glad this counseling has helped you.

Thank you for posting Astrocyte, I'm glad you've found some benefit from it.

Offering help for people to deal with any chronic disease is good, but as you so rightly say it isn't CBT as we know it for ME and even more unexpected coming from BARTS!

May I ask, when she said the treatment wouldn't cure you, did she say why?

Did she ever say it is a physical disease?

Do you think you were just very lucky, was she a rogue therapist? Just her approach sounds so contrary to BARTS/PACE view of ME - patients are wrongly thinking they are physicallly ill and deconditioned. Have you heard of any other people receiving a similar approach there?

There doesn't seem to have been any whiff of saying you are wrongly thinking you are ill in your treatment, is that so?

Has your fatigue and PEM improved with the treatment? Well I guess if you are pacing better then it may have improved a bit.

Here's what a manual for Dutch/Nijmegen CBT says - one couldn't call this acceptance:

Getting Rid of the Patient Label

Many patients find it hard to stop seeing themselves as
patients. The term chronic fatigue syndrome already seems to
imply a permanent condition. The fact that many CFS
patients have been suffering from symptoms for quite
some time before they are referred for CBT does not
contribute to their developing an optimistic outlook as far
as a full recovery is concerned. In addition, patients who
are referred to a psychotherapist for CFS generally
assume that they will learn to cope with their complaints
rather than learn to perceive themselves as healthy
individuals again. This is why shedding the patient
label should be one of the first points on the treatment
agenda. In the final phase of the treatment this point is
raised again when the patient is asked what he thinks still
needs to be done before he can replace the marker
reading patient by a label indicating healthy. The
response of healthy individuals who are suffering from all
kinds of flu-like symptoms will be quite different from the
reactions of CFS patients, who, when they are incidentally
experiencing symptoms again, will usually interpret
signals from the body as symptoms of CFS instead of
normal and temporarily fluctuations of the body.

I know a couple of people who had inpatient CBT and they often go on about how many colds and sore throats they have. I have to wonder have they been convinced to see such symptoms as signs of infection rather than flare-ups of their M.E. (esp. that they don't see the symptoms as signs of having over-done it). They talk about how well they were doing building up and then a cold/sore throat comes along and they have to go back.

There are four parts to the therapy: CBT, Pacing, Mindfulness and Acceptance and Commitment therapy. I'll deal with them separately and give examples but they do in fact weave nicely together.

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Thank you for sharing all that. I can see how that would be a bit of help to most of us.

My own psychologist sessions are on similar lines (thou she dont work with me on pacing) with her quite aware that this illness is serious and supporting my view of that completely.. she does things like encourages me to seek out better doctors cause my doctors werent good etc etc.

One thing I do really want to say in view of your post, is that this isnt really CBT but the therapy you've described is DBT but with pacing added to that. DBT includes both CBT, mindfullness and acceptance and commitment therapy. ...

Thou I found most DBT specialists not being of help as they didnt truely understand ME/CFS and I already was well practiced in the other part of their therapy... the psychologist I have now is very helpful.

Like yours, she also helps me to trouble shoot life issues when my brain isnt able to think well to help me find solutions.
.........

I suspect in those CBT studies in which patients improved.. may of been more along the lines of the above rather then the CBT some therapists do do.

When I first met the therapist I mmediately felt comfortable with her and I think that has made all the difference.

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I think that is one very important thing. If someone dont feel comfortable with their therapist and dont feel like their therapists understands, they probably are the wrong person for them.

For me pacing, involves more regular rests and doing things in a chunked way.I started with an arbitrary 10mins rest and 10 mins activity and built from there. And I still play around with rest/activity ratios and go back to 10 min activity when feeling rough. There are days when I dont pace at all.... but then suffer for it.

Because I'm really good at ignoring my body, I'm attempting to be more sensitive to my energy levels but using a timer is really useful. I still struggle with getting it right. Perhaps there is no 'right' as energy is in a constant state of flux.

Click to expand...

I personally dont think there is any 'right', one cant always do pacing to a 'set plan' of time, as each day can be different. One thou can work out what usually works best for oneself and follow that, but keep watching ones body in case things have changed and change the times of things accordingly.

Like the flux of this illness... managing it also needs to have some flux.

But the question still is... Is this the best use for NHS money to help people with ME? it isn't an either or situation eg. this type of treatment/therapy and/or treatment for physical symptoms, its this or nothing.
And the more money put into it and patients reporting its been a success will encourage them to put even more money in it.
Why have these people got the nerve to offer this treatment, say its not a cure but have not the slightest interest in standing up and saying these patients need proper investigations and treatment. Sorry in my book they really don't give a @@@@. Now get on with your life and cope with your illness in a different way and with the coping skills I've helped you to develop. really??

Quite agree maryb - it's a distraction in prominance (nothing else around) emphasis (behavioural) and monies being used which could be better spent on understanding the disease/pathologies etc for CURE. If the "behaviourists" had kept out of ME medical science in the UK may have had a chance from early findings at the Royal Free and progress.

That's great new, Astrocyte! That is what CBT was originally intended to be (as I understand it), and is the CBT one is most likely to get in the US. Wesseley's false illness belief crap has no place in ME/CFS treatment, but CBT that helps us cope with the trials of a debilitating chronic illness is a valuable adjunct to treatment of physiological symptoms.

It is encouraging that Bart's is offering appropriate CBT -- therapy that is clearly understood not to be a cure, or even a treatment for physical symptoms, but simply a coping tool. It sounds like the therapist you saw is knowledgeable about ME, which is a rarity, and was not encouraging you to do more than your body can tolerate. I hope this is a sign of better times to come for UK PWME.

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Thanks SOC, it is encouraging!

The trouble is in the UK, we're not very good at communicating what's going on. Had I described this in 2015, people would have gone on making assumptions about what kind of CBT was being used, when in reality what was going on in clinic was something rather different. Their web page does actually make it clear what therapy will cover and that is coping and relapse etc. but not exactly how therapy will be done.

But nobody looks there and unless you experience it first hand, there are so many understandable myths flying around based on poor experiences from years ago, perhaps from other clinics and from PACE, that patients not using the service dont know what is really going on. So I do think they could make a bit more effort in communicating this. I think they're trying with a newsletter format these days.

Hopefully we'll one day have a more honest and open discussion of CBT and it's potential uses for CFS, along with some accountability and an apology for the problems of the past.

Sorry to hear about your recent colds, but hopefully things will keep improving for you now we're approaching Spring. Good luck with your health.

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Thanks Esther.
Have to say it didnt really feel like advice i was getting. It was far more about the therapist asking questions so that I was able to work stuff through and come to my own insight. That way, I can continue to ask my own questions and gain insight when the therapist is no longer there... which is handy!

Have you asked your therapist about why it is the approach to CBT they've taken for you is so different from that described in PACE? Do you think that the people working there feel any sense of shame over the way in which views about CBT for CFS and it's efficacy have been manipulated and misrepresented?

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No but I did ask Peter White. He said that PACE was a study testing individual treatments whereas the therapist was using whatever she felt was useful for me. Treatment is individually tailored.

I think in general, what goes on in research papers is very different to what goes on in clinics. CBT had grown to cover a huge range of therapies. Check out the wiki page on CBT!

I think the way PACE has been overplayed has two aspects to it. And these are entirely my own views. They underestimated what the media would do with PACE by a long way and they underestimated the role new media would play in blowing it out of proportion. I saw a TV interview of Mike Sharpe post- PACE and he concluded by saying something like, lets be clear these are only moderate results and..' and he went onto say something else that moderated the hard line the interviewer was taking. THat moderation was cut the next time I saw the same clip to make his views sound extreme. Editors want extremes because they make better stories. They dont care about the impact that has on the patients.

And then the spin in the journals which I know is your big grumble. This is endemic in science not just CFS science. As you have said before with Esther Crawleys 30-40% recovery paper was aimed at NHS commissioning and keeping her clinic open. Not at patients. When interviewed she's the only one that describes the actual experience of CFSers in concrete terms that Jo Public can understand. And she talks of pacing not recovery.

Then there is the larger context. If you read some of Peter Whites early responses post PACE he talked about massive cuts that are ocurring in the NHS.

We know that tHe NHS has to save 20 Billion over the next four years. Thats a lot of money! Services across disciplines are being slashed. And a number of CFS clinics are under threat or slated for closure. For the patients that use them this is a serious loss. So I would suggest PACE spin is not a personal insult to us but a necessary piece of politics in the face of the devastating cuts to the NHS.

Thanks for the link Boule de Feu but apologies, there's a lot here and couldnt quite read through all this at the mo.

I think its difficult to try to define things in order to describe them to others particularly when they're so complex. For me just 'therapy' is probably most accurate and the Barts therapist talked of Integrated Psychological Therapy.

So did you find your 'health psychology' experience useful? What was the main thing you got out of it, if you don't mind me asking?

Thanks for sharing your experience. I have done some of this work before too. Not in relation to being sick, but I"m able to apply the principles to that situation now. You did a really good job explaining it all so clearly.

The part about the Acceptance and Commitment Therapy is new to me. That is where I think I probably struggle most. So much of what I valued in my life, like being independent, taking care of myself and family, etc. aren't really options for me anymore. I'm not even able to do things I'd like usually for others. Trying to figure out life when you can't do much of anything is hard! I'm so glad this counseling has helped you.

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Thanks Ocean, I really appreciate your kind words.

And you're so right, adapting to the person who is the new us, is so difficult. Living the new life that we dont want to live can be near impossible. I found one of the useful ideas from Acceptance and Commitment therapy is that when we are stuck in a situation that we cant get out of (and I'm not saying never get out of but for now) when we are stuck, struggling actually makes things worse.

if this is the moment I have to live right now, why not live it with commitment instead of running in the other direction? Sometimes its so difficult I have to run! But mindfulness helps with holding the pain and easing it When things are not so bad, committing to the moment in small ways is very empowering (even if its doing the washing up). For a little while I feel very alive... and then I forget about focusing on 'now' and start thinking about something else. At that point the washing up definitely loses its appeal!

If you'd care to share, I'd be interested to hear about the helpful stuff you learned before that helps to get you through?